Alexa James, CEO, NAMI Chicago – Key Insights on Mental Health Advocacy and Support

Nikhil

Hi, this is Nikhil coming to you from Chicago with The Shelly Story. My wife Shelly and I wrote a book and are currently working on a movie about our journeys with mental health, specifically bipolar disorder.

As an offshoot of that, we’ve developed a podcast called The Shelly Story, where we speak to people from a broad variety of backgrounds about diverse issues, most notably mental health. We’re very excited to speak to today’s guest, Alexa James, the Chief Executive Officer of NAMI Chicago, which is the Chicagoland chapter of NAMI, which is the National Alliance on Mental Illness.

So a little bit about Alexa’s background. She is, as I said, the CEO of NAMI Chicago. She’s made NAMI Chicago a leading voice in the conversation around mental health in Chicago and beyond, through partnerships with Chicago’s first responder agencies, the Office of the Mayor, mental health providers and community stakeholders among other players. She’s represented NAMI Chicago on the police accountability task force under Mayor Rahm Emanuel the COVID-19 recovery task force under Mayor Lori Lightfoot, and the Health and Human Services transition committee. In early 2021, the Chicago Police Department announced Alexa’s appointment as their senior advisor of wellness aimed at building a culture of wellness and care for police officers.

NAMI Chicago’s message is at the heart of Alexa’s leadership, that with courage and hope we can bring healing to those who are overlooked in our mental health system. And in our society. She holds a bachelor’s degree in psychology and a master’s degree in social work from Loyola University, as well as a master’s degree in child development from the Erickson Institute. She’s a licensed clinical social worker in the state of Illinois. So Alexa, it’s great to have you on the show. Thanks so much for joining us.

Alexa

Thank you. I’m sorry about that bio. We’re going to work on that.

Nikhil

No worries, no worries. So can you tell us a little bit more about your background, adding to the summary that that we already provided?

Alexa

So I’m a lifelong Chicagoan. I love the city and all of its “stuff.” So I feel very privileged to be in a space where we can really work to organize and orchestrate reform around mental health, but grew up in Chicago a lot surrounded by a lot of mental health issues, and addiction and things of that nature probably drove me into this space, I mean, not necessarily in a positive way.

I think a lot of people go into this field because of their own lived experience. And while I think that’s so meaningful, and you know, certainly we can talk about this. And important when it’s not identified as the why I think that can get complicated. So it took me several years; I always worked with individuals who have been impacted by their, that their experience of trauma has impacted their trajectory. And typically, the trauma is poverty and family broken families systems.

And I have never prior practice privately, really doing a lot of one-on-one therapy, because systems has always been, I think, where my highest and best uses. So, coming into NAMI almost 10 years ago, I worked in sick psychiatric hospitals, I worked with youth in care, did some private practice stuff with kids. This is like the best place in the world, I think NAMI Chicago is to as a platform for real system reform. And we have an incredible contingency of people who are really eager to share the good and the bad. And we are really eager to elevate their voices in the conversations about what really needs to change so that we have a healthier, more equitable system.

Nikhil

Yeah, that’s, that’s great. So you mentioned a lot, you touched on this a little bit, but I’d like to understand a little bit more. I mean, obviously, whatever you’re comfortable sharing with, but you would my you know, there’s always a question when people are in positions like yours, when they have a lot of influence. And you know, they they’re heading a very important organization, it’s always good to turn back the clock and understand the why and sort of what brought you into mental health. So if you could touch on that a little bit more just about maybe lived experiences or personal interest, like what really compelled you to get into this into mental health space?

Alexa

Sure. Well, I would say first of all, anytime you are a leader, and arguably you don’t have to certainly don’t have to be a CEO to be a leader, but anytime you are in a position where people are following you, you have it is the responsibility number one to have insight. And to be open to that feedback and responsive so that took me a little bit um, yeah, I think that like, it’s so interesting. In to reflect on our own mental health journeys. It was always a really sad kid. There was likesome challenges in our family that certainly are not unusual and in comparison, very light. But here’s the sad kid and I end because I was a sad kid, because I grew up that way.

I thought that just what it was. I thought, everybody and I don’t know why if you, I don’t know, I felt like everyone just lived in a great place. And when there was joy, how exciting, but most of it was like pain in my heart all the time. It took me a very, I mean, I was in therapy and Oh, move and it just meant disorder, whatever, forever. And, like life circumstances for me, it was like, why we’re getting divorced or I this happened or I work is very sad. So, and I’m an empath. So like, of course, I’m like owning that energy.

And it wasn’t till very recently, actually, that I had a conversation with one of the men who we honored at the gala that you guys were at a few weeks ago, Dr. Bandra – ketamine infusions, and I was like, on Zoloft, very high functioning (whatever that means). But I isn’t normal that I always am really low, like, and then performative, right? So it’s like, I’m out doing that was exhausted. He’s like, why don’t you just try ketamine, and it totally changed. And I think it took me that to, to see what was on the other side to be like, That’s what most people feel like every day.

Shelly Sood 

Like, that’s what’s really interesting is because I feel like all of our pain, we tend to normalize it. And we don’t know or understand what’s on the other side. And what could be until we experience it. You know, because when we have the situation with Nikhil, I normalized his disorder, this was our life, this was our marriage, and this is, who he is, and who I am. And not nothing outside of that. So it’s amazing when you have that, that wake up.

Alexa

Right? Right. And when you wake up, wake up, and you also have like, like, access, I mean, I literally have been running one of the largest mental, the advocacy agencies, I understand symptomology. So it’s it fascinating. And I think that honestly, I am some, I gotta, you guys are gonna regret a pocket. I really feel that whatever powers that be, whatever my spiritual said says, I really needed personally, to go through this this journey, even though it’s been incredibly painful, that I can be a better leader in this space. Because I think my life’s work outside of being a parent, of course, I like to work is to dedicate myself to this mission. And this will enhance my perspective.

Nikhil

Yeah, thanks for sharing. That’s a really powerful story. And that that really aligns closely with what we’re all about with the Shelly Story, in our book or movie, because we went through a lot of trials and tribulations. I had suffered from undiagnosed bipolar disorder for more than two decades. And with Shelley’s help, I got a diagnosis got the right diagnosis, as opposed to getting mislabeled as having depression. So got the right diagnosis got on the road to recovery.

And I will say that NAMI Chicago was a big part of that recovery process, because I have my wife, I have my family, and it’s great to have that support. You know, there’s all kinds of meditations I can do. But it’s really important to get out there and hear from other people who are going through this, because, like you said, it’s like you have this perspective, where you’ve normalized it and you think, oh, it’s normal to be sad all the time. And when you hear other people what they’ve gone through, and how they’ve come out on the other side, and then there’s always there’s not always a success story that was extremely helpful for me. So I really applaud all the work you on the in the NAMI Chicago team are doing.

Alexa

I didn’t realize you had connected with us during your…

Nikhil

Initially, yes, I did. I went, I went to a couple of support groups. And it’s a little challenging, though, because everyone’s on a different point in the journey. Right. Right. So I mean, I will say, for me, it was maybe it wasn’t an exact alignment necessarily, but at the same time, there’s always strength in numbers. So hearing some of the people out there who are going through that, I think just made me feel that there was that I wasn’t an anomaly. I wasn’t an outlier yeah.

What I always say is, I guess what I have been fortunate with is just that I do have a supportive spouse, I do have a wonderful family and I do have a lot of resources that I think. Without that, NAMI Chicago would you know, be my lifeline? Right? So I’m just saying that, for me, it was maybe it might not have the same impact as somebody who’s who’s on the street who’s homeless? Who doesn’t have access to a good therapist, like I do? You know? So that’s, that’s super important. For sure.

Alexa

Yeah, I think your point about support groups is really, and I don’t know, when you went, we actually have grown a lot of them during COVID. Because who knew that people more people will come if it’s virtual. But we are been, we’ve been, people have been asking us for years to be really specific to like diagnoses or treatment modality. And so we are our age group. Right. And so we are building from that lens.

Shelly Sood

I’m just curious, what have you found to be the most challenging with regards to your role at NAMI Chicago, some of the barriers that you face, I’m sure you can name several.

Alexa

Funding is a huge challenge. And it frustrates me. And the disparity of funding in the social service space is incredible. And a lot of it is network, and a lot of it is hustle, which is fine. I don’t mind a hustle, we. And this kind of I’m so we’re so grateful to our partners in philanthropy and private and corporate. And I think that they’re absolutely responding to this. But there’s this like, there’s this idea that like, we have to be so prescriptive in the funding, because they want to be able to demonstrate to their board metrics, which totally makes sense.

Alexa

But our biggest challenge is just being able to get general operating dollars, so we can grow and innovate and actually start to grow the infrastructure for sustainability. We’ve had so much rapid growth at NAMI Chicago, like 71% increase in 18 months, in terms of standards. So wow, that’s a challenge. I think, honestly, the wellness of my team is a constant. Not worry, I actually think we have a really strong wellness program.

Watching other companies not take that seriously, it’s very difficult. And honestly, me feeling like I’m on 24 hours a day. I don’t really get to. I don’t remember, I was talking to a friend of mine. Like, I don’t remember. And he said, I took I’ve taken vacations, but I’ve never like taken a vacation. And yeah, yeah.

Nikhil

Yeah. And they say that with mental health, a lot of times the caregivers, I mean, it exacts a big toll on the people, not just the person who’s suffering with mental illness. And I’m sure Shelly can…not can she did write a book about it. But it can be very draining for the people who are charged with providing that support.

Nikhil

And one of the things that I really applaud you for is, it sounds like that’s something you’re really making a concerted effort to address with your staff. Because I think I don’t remember if it was the Bright Arrow Coaching podcast that you had mentioned this on. But I think you had mentioned that you are very transparent about taking some time for yourself. And, whether it’s like going for yoga or doing some type of wellness activities. Can you talk a little bit more about that about how you’re trying to basically foster this sense of transparency and having an open dialogue about mental wellness, not just in the community, but within the NAMI Chicago staff? For sure.

Alexa

Yeah, I wouldn’t even say we’re trying to I just say we do. I mean, radical transparency is not listed. It’s one of our values, but integrity is, and not everybody. And it’s interesting, not everybody like once that which is fine, too. And everybody wants to share all of their stuff at a leadership meeting. But what we do have is so much openness, that when people are ready, we receive them really well. And a lot of that is through a significant investment in culture like cultural onboarding, sure, and modeling it as leadership.

So we’re really strict now with our leaders, like do not email me at 10 o’clock at night and if you are scheduled to Sunday at 8am, not because we’re not going to look at it but because the people that are seen on there now think that that’s the expectation. We work really hard on that.

I think we also work really hard on listening and being accountable to each other and knowing that We are going to make mistakes. But a relationship is built on mutual accountability and trust. And so yeah, I mean, we work really hard. And there’s, there’s bumpiness. The other thing is that people should use their work time for wellness, it this is a not a job.

But I think that my team, we really reframed it to this idea that this is not about feeling powerless everyday, because the solutions are not robust. This is around the back, knowing that scientifically your support and your love for that person on the helpline or in the court system or whatever, really is meaningful and does change the brain chemistry that like reducing their sense of powerlessness is part of our wellness strategy, too. And frankly, like, yes, the work is heavy.

Yes, there’s a lot of sad stories, but I actually feel mostly inspired after my days of work, because the privilege of being able to be like be in someone’s most intimate moment is really exceptional. It’s, do I have enough now to give to my family? Or to other people? Or am I done? So it’s kind of figuring out that balance, which will work that so yeah, take like, I’m gonna go to a wall. No, I’m actually not working during the day.

But my assistant every Monday does not let anybody schedule anything with me from 12 to 1:30 or 2, one of my favorite yoga class. And I encourage my leadership puts Do Not Disturb time on their calendar for at least an hour every week where they should not be doing any work. They’re doing something that’s self-care, and for them if it is catching up on emails, if that makes me feel better than do that. But you are not to interrupt.

Nikhil

Yeah, well, it’s so important what you mentioned, Alexa, because technology, and this is something that’s always fascinated me is just technology, the whole goal is to increase collaboration, please increase communication. But there’s the dark side. And it does, because obviously, there’s communities that you can form. And that’s been sort of the crux of our platform, which is interacting with folks like yourself, interacting with people who have gone through the disorder. But then there’s also this constant 24/7 culture of always being on, I wanted to understand a little bit, and I applaud you for sort of putting a line in the sand and saying this is basically that needs to be time that you are not you know, where your energy isn’t consumed by the latest crisis, dude, your resume Neue, I guess if it’s at night, but just basically you’re able to focus on just recharging and taking care of yourself.

Nikhil

Can you talk a little bit more about what you seen since your time with NAMI, in terms of like how technology and how social media, like what role has that played in mental illness, mental wellness, not just, I guess, with the communities you serve, but also just in your experience, in your leadership role?

Alexa

Hmm. You know, you guys always you podcasters always ask this question. It’s so interesting, because I find like, we’re on this platform, right, where it can be shared. It’s ironic, right? But it’s really important. So what do I see? So I see that advocacy and policy pushes have been made more accessible for a lot of people because of the social media platform and right, like on the other side of that, but I think that we are way too frequently, consuming information. Yeah. Yeah. Way to vote and even like, unbeknownst to us, yeah. I mean, I took an Instagram break for like, almost a month, and I actually felt better.

I do think that there’s real disconnection and social media, obviously, I think that particularly what we’re seeing in young people in our mental health crisis is this constant experience of competition. Like having this platform to be able to show their best self which is so developmentally like raw and almost like the perfect like explosion of our sense of capacity itself.

So I think it’s really dangerous. But and I think that there are really interesting folks who are using social media, particularly around their mental health journey. To tell that story in a way that’s consumable, because in that space, like with TikTok, I’ve seen some really interesting things. In that phase. It’s pure bass. Like you’re not unless you you’re not Bruce Springsteen coming out and saying, I’m depressed, which is not a relatable figure for most of us.

You are a person who lives in rural Kansas and is talking about anxiety and how their parents don’t hear them. And that that sense, I think, is huge. Then what right like that, how do we teach people to connect in a way that is healthy and meaningful? So I think it’s, I think it’s problematic, mostly. And I think there’s opportunities, and you’re gonna see these interventions from meta. And all of these different organizations, right, trying to police content. I don’t think that’s the issue. I think it’s about like, how do we teach people how to consume? How do we help people identify powerlessness? How do we help people identify sitting in dysregulation and feeling not comfortable, and that everything else can be mitigated?

Shelly Sood 

Yeah, I feel like also, that’s a very good point, we decide who we want to give that power to. So we’re going to decide that it’s going to be social media, it will be social media, or the Instagram will be whatever platform, right to consume. And I think that even goes with organizations that people are part of, and the people that are around them that power and control is what we have to decide. It’s not necessarily social media. That’s the problem, per se.

Alexa

I think. That’s right. That’s right. Yep.

Nikhil

Yeah, for sure. So this is kind of an interesting direction here. But I did want to step back a little bit, because I know what NAMI is, and like I mentioned before, I mean, I’ve gone to some support groups and things. But maybe in a nutshell, can you give a little bit of a, like, 30,000 foot view of what NAMI does? I mean, aside from the workshops, and I think it’d be helpful for people because they hear National Alliance of Mental Illness, but maybe for people who are listening, maybe like, what can what can NAMI do for me?

I know, that’s a very broad question. But maybe if there’s some highlights that people hear an excerpt, and say, “I need to go to a support group, or I need to get more engaged.”

Alexa

I mean, it’s simple. Actually, if I like your the way you pose that question, which is what can NAMI do for me, NAMI Chicago will show up. It is our responsibility to answer the call and whatever form that takes, and hear you from your experience and work with you in your own construct. While you kind of guide us sure, while we help give feedback about what we think would be helpful, we are like the broker of the mental health system in many ways, because of the way that we’ve vetted and understood different systems, and it’s so complex, and so we help people negotiate that system in whatever form that takes, whether it’s through a support group, or through our helpline, or through any of our programs.

And we really are hoping to the other thing I would say, and understanding me, Chicago, which is different from other NAMI , we’re all autonomous, but we really focus on the, on the whole continuity of care. So from the prevention, to the intervention to the postvention, I think a lot of the healing happens in the postvention. And so that’s why our relationships are not transactional. They’re ongoing and hopefully meaningful for people we serve.

Shelly Sood 

That that drives so much value for people. It’s incredible. Because if you look even at the medical system today, we don’t have the quarterbacks we don’t have the quarterbacks advocating forus, our family members, or loved ones that are suffering. And so that quarterback is fundamental. And that’s what people are missing. They don’t have that guidance.

Alexa

Yep. Yep. And, and when the Affordable Care Act, right, like there was supposed to be particularly with, actually, for Medicaid, there was supposed to be this care coordination, and there still is, but it’s very, again, you just can’t like plop a service into a system without real understanding of relationships and systems. And and I think that that idea has shifted into cost management and, and that I’m like the ombudsman, right. I’m not like your quarterback. I’m not your health advocate. Right.

Nikhil

Yeah. What’s just curious? Chicago? I mean, we’ve lived here for almost a quarter century. We love it here. There are I mean, it’s not a perfect city, there are challenges, obviously there’s a lot of divisions, I would say income culture, etc. Just curious in terms of what you’re seeing, what do you think has made mental health in Chicago, unique from, let’s say, Los Angeles, or New York, or maybe some rural communities? Just curious to get your take on that?

Alexa

What’s different about Chicago?

Nikhil

In your role leading NAMI Chicago, what are some of the challenges that Mental Health presents? I mean, I’m one that I would think of as just the huge division the huge disparities in access to mental health facilities, but just curious, like, what do you think has made Chicago unique in terms of the mental health challenges that you guys face?

Alexa

Yeah, I mean, here’s the truth. The truth is we actually don’t have lack of resources. We’re a huge city, we have a huge health care system, its accessibility, and challenges about in our insurance policies and programs, it’s around quality. We have a clinician, but like, do they actually, who’s auditing them? That we don’t have that. And frankly, because we have a dearth of psychiatry, a lot of psychiatrists are no longer on insurance panels. So it’s private pay. And when you remove yourself from an insurance panel, you also remove yourself from accountability.

So there’s no there’s they’re guided by ethical practices. And there’s very little customer service hotlines for folks who’ve been unsatisfied. So Chicago has a lot of advantages, because they’ve, they’ve huge health care networks, and there’s been policies put in place that are forcing these health care networks to build alliances and collaborate and build out more community work. The issue and the challenge I find specific to Chicago, is we do community healing and individual healing in the same way. And it’s totally different. We like plop services into communities instead of asking them to build and really hearing, I think, with this current administration, actually Mayor Lightfoot is really interested in the perspective of community.

So those conversations that has changed a little bit in terms of like, intention, once it happens. The other thing that’s unique and problematic about Chicago is our systems of government do not work well together. So like our county, our city, our state, we’re not coordinated and, and the cost sharing isn’t effective and like cost passing. You know, like, I write, I’m not going to do with this person, so they’re gonna go to Cook County Jail, like it’s…

Nikhil

It sounds like it’s very siloed

Alexa

Not just siloed; there’s a lot of fiefdom, I think, and there’s a lot of different layers of power. Whereas in LA, for example, I was actually with the former police chief of LA last night. And I noticed this when I was there, studying and doing some, like ride alongs and working with them and their mental health diversion program, their systems really coordinate and cost share. So their Sheriff’s Department, their county, in their city in their state come together to work towards similar goals and have voted with their budgets. I think that’s something that’s missing here, for sure.

And then, of course, we have we are in incredibly segregated city. And no one is really identifying the fact that the inequities that everybody faces no matter if you are a police officer living in a single family home on the northwest side of Chicago, or someone who is struggling to survive on the west side of Chicago, the core challenges are the same and we’re not coming together. feelings of powerlessness, oppressive government, change averse, lack of equity, or lack of access, like, those are all things that we’re feeling and we’re not coming together. We’re like, dividing our free ourselves from this comparative suffering lens, you know? Yeah, but like some good news.

Shelly Sood 

We’re a bunch of downers.

Alexa

Mayor Lightfoot is funded mental health in the biggest way ever. So and she’s a very, she’s a very smart leadership team in the Department of Public Health who is implementing this? You know, our worry, of course, when the funding dries up, like what do we do, but there’s some there’s some there’s some demonstrated live projects that are promising.

Nikhil

On that note, in some of the clips that you had done on like ABC News, saw you had collaborated with Lakeview Pantry and DoorDash. There are a lot of organizations that you had honored at the gala, like the Blue Door Neighborhood Center and the Illinois Prison Project. I wanted to ask you a little bit more about some of the other public and private sector partnerships and initiatives that maybe you wanted to highlight sort of that shows the contribution that NAMI is making to the mental health field.

Alexa

Sure. Yeah. I mean, we are in alliance. So we don’t want to operate it all by ourselves, and we don’t have them and we are not. We’re not a one stop shop in terms of mental wellness. I mean, that’s what we kind of push out. It does. You know, the nonprofit system in Chicago was super interesting. There’s a lot of like, it was just a short social service. There’s really incredible leadership that maintain mostly and it’s changing a little bit connections with the same people. So violence prevention works, violence prevention and food insecurity works with food insecurity, or they like, Lakeview Pantry just blows my mind because Kelly O’Connell, brilliant CEO, and she’s really engaged with other people, mental health works and mental health, and substance use and whatever.

And so what we’re really trying to do is break that a bit in terms of sharing more responsibility, because this is also how government operates. For example, if you have a developmental disability, intellectual disability and a mental health issue, they don’t know what to do with you. And, and a lot of our people we’re seeing are coming into the mental health system with seriously concerning IQ levels that were never identified, for example, and so we’re throwing it through the wrong system. So we’re trying to really build much more human service connections with people.

And understanding that health and wellness and community is so important to our well being the importance of connecting with faith-based organizations, with fitness organizations, with people with after school programming, everything that alleviates this stress on family systems and individuals is important to us. I think that there are a lot of interesting forums in Chicago for people to connect. I think that the bandwidth of leadership is so lean, that we often recreate a wheel as opposed to leaning in what’s already been done.

So I think that this is just going to be is ongoing. And I’m very inspired when I get to spend time with other leaders in this space, like I did last night. It’s really incredible. But it’s interesting to watch how different the dynamics are depending on what area of expertise you’re coming from.

Nikhil

And you touched on fitness and faith-based organizations. And I see, one of the roles that you have in your organization is what I found interesting was the chief wellness officer. And I’m bringing that up, because obviously, May is Mental Health Awareness Month, and there’s tons and tons of discussions and activity online about ways to manage our mental health.

When people think of mental health, typically they go to think of like medication, or they think of going to see a therapist in my journey. And I think for any journey, really, those are what I would say I would call them quote, like table stakes those are sort of like the bare minimum.

I wanted to understand a little bit more, because you see, one thing I picked up on is you had mentioned that our thoughts can really influence how our body functions and it can influence our, our DNA and our cells, etc.

So it seems like you’re pretty plugged into things outside of the box, not just medication and therapy. Could you talk a little bit more about some of the other outlets or resources that maybe NAMI Chicago is advocating or promoting? And maybe in your own journey, sort of what has been helpful? I’d love to hear that.

Alexa

Yeah, I mean, I agree with you, it’s basic intervention. Baseline, I should say, really, medication therapy. Because the because the medication should reduce symptoms. And often in creates more symptoms in other spaces that you didn’t invite into your life. And therapy then is where you are supposed to be clear in terms of learning how to navigate with corrective or healthy coping strategies. But you can’t practice any of that stuff without relationships. Relationships are how we heal. And so if those were the only two intervention points it becomes, it’s like we’re telling you like train for a marathon by yourself. And on race day, like run in place.

Nikhil

Or reading books about running a marathon to practice, right?

Alexa

Yeah, yeah, right. And we know we know from science that our mental health and our experiences of trauma change the way our body works. I don’t know about you guys, but like, I am so hyper vigilant. My kids think it’s funny, they like scare me all the time but like I will know that they’re there and I still screen because I like you guys it’s problematic. Mommy’s operating from a place of very high cortisol level.

But you know, we are a lot of us are really in this fight or flight space a lot, a lot more than we should be and what that does to our bodies. It’s very damaging. Our blood vessels are bigger, we are more likely to develop cancer or heart disease, we are more likely to develop mental illness and asthma and other respiratory issues. You see this inequity in a lot of highly I mean, we talked about COVID (I know I’m all over the place), but black and brown communities were more impacted.

And a lot of people thought that was because of the occupations or lack of education around facts, whatever it was, and maybe yes, and there are also a population who are basically it can be immune compromised, due to the fact that we have been oppressive and traumatizing.

So that that is a part of this, too, that our physical health is incredibly important and what our chief wellness officer that you brought up, and chief wellness officers that are involved in organization should be identifying those six pillars, or those five pillars of wellness, right, which is qquity at the center: do people feel like they have a voice? And then community health care. Center of purpose is hugely important. Boy, can the workforce be a sense of accomplishment there? And housing? Do people feel stably housed? Do people feel like their office reflects what they wanted to look like? Do people feel comfortable? Is it accessible?

The purpose is huge. Having a boss that is inconsistent, can be maddening and painful and traumatizing. feeling like you have been removed from your purpose because you’re so married to it that when you go on vacation, it depresses you because you’re like, there’s a lot of layers there. I think that I was with the police department for a year, a lot of their health issues were around purpose, and not feeling comfortable.

So that is the strategy in which our Chief Wellness Officer addresses the concerns of our team, but also when he goes out to community to support organizations, that’s the lens in which we use as well.

Nikhil

Okay. Yeah. And I think beyond that, I guess I was also curious, like, Are there alternative approaches that maybe NAMI is is exploring or advocating? Like, I think when I was digging around, I saw that there were some meditation sessions that NAMI had organized, I was just curious to see like, what?

Alexa

Yeah, meditation, yoga, will pay for people to go to fitness classes. We pay for therapy, what you know, it’s not cookie cutter, right? It’s, for me, my self regulation is intense exercise every single day. Most people do not find that enjoyable. So we sit with people basically, and create like treatment plans. We also are reading, we’re redoing this, we kind of dropped off for a little bit. We also include new hires, and current hires, their caregivers into conversations about what does this job feel like for them? How do you have that conversation?

A lot of our staff is like, we don’t want to tell our loved ones what we experience every day, you if you do that you’re losing 60% of your life of intimacy, sharing your life with somebody. So we bring in, so it’s completely comprehensive, and we’re never we’re never like, this is enough like, what else? How else can I be the overbearing Jewish mother that I am? And all of the ways so? So yeah, yes, whatever you meditation is not my jam, but it is for some people.

Shelly Sood 

Yeah, that’s incredible. You know, it’s not a one size fits all approach. And you mentioned people who are lost who don’t quite fit in that box. And the system just doesn’t know what to do with them. So you’re really doing incredible things by helping them along with a full holistic type of approach to healing. Yeah, so important.

Alexa

Thank you. Thank you.

Nikhil

Yeah, and, and relationships. I like what you said there, because that’s, that’s so important. And one of the other things you mentioned on that Bright Arrow podcast, you talked about, there’s two sides to this coin, really the with the community? Because obviously there’s good things with it: you have that support system, you have people you can you have a sounding board you have people you can bounce ideas off of.

But then on the flip side, there’s the concept of toxic communities. And I think that that’s something that, I mean, in our personal life, we’ve definitely found to be that that can be more debilitating sometimes, then than anything else. I mean, I want to if you could talk maybe a little bit more about that, like in terms of what you’re seeing with toxic communities and how that can impact mental health.

Alexa

Yeah. A lot of us are living in toxic communities, whether it’s our family systems or our neighborhood. I think that there’s something to be said around well, there’s toxicity in terms of just never feeling safe in your own community. And what that tells you, what it can tell you is you’re irrelevant, it doesn’t matter. You are being protected.

And that is if when we are fear based, and we’re operating from a fear-based system, our brain operates in a very different way and we lose You know, efficiencies in our brain. And then there’s toxic communities that are breeding mental health issues because the chronic stress constantly with no reprieve, and no basis and no focus on resilience building, you think about people who are like going to war.

And when done well there’s different parts of the military in different parts of the world that do this better. When done well, you there’s prophylactic, there’s engagement early on, and resilience building and real like honesty around what this experience is going to be like. And then that postvention piece that we talked about, when that happens, the rates of PTSD or lower the rates of all of these things, knowing that people are just predetermined to have that, right. We don’t do that we don’t operate from that lens.

We don’t operate from like, what are our protective factors in the community and what is being broken down. It’s interesting, when we look at we don’t know this to be sure that I haven’t like publicly talked about this. But when we look at our helpline map, like who is calling from what communities and who, when they call who is the most like acute and disrupted their communities that are going through gentrification?

And so I wonder to like, how much of that disruption and community makes people feel so ungrounded and so unsteady, that it comes out in this way. So it’s, I think it’s a challenging issue.

And then it’s also in terms of the intervention, how do you go into communities that we perceive to be toxic, that are not our communities, and try to force intervention and use language? That is not shared language? So I feel Yeah, I feel like it’s not hard to become a toxic community, unfortunately, or a toxic family system. In the state that we’re all in right now, which is like high burnout, very change averse, very tired, very internal, and like not super self reflective.

Shelly Sood 

No, I mean, I think that’s a incredible point you’re making here. So what would you say? You see, where do you see NAMI Chicago going? Alexa in the next couple of years?

Alexa

Oh, God, it’s fun to dream. We’re in the midst of some strategic planning, which is fun. I like now I need to be an actor in many different spaces. I would like I would like NAMI to really support workforce development, particularly with peers.

Nikhil

I think you had mentioned that NAMI is working with private corporations like helping foster mental wellness programs in companies?

Alexa 

Yeah, for sure. Yeah, we’d love to do more of that, too. I think that there’s obviously I mean, I you know, you put Google alerts on your phone for workforce wellness, it’s a hot topic. And we can provide consultative practices, training and ongoing basically come in and act as your like chief wellness officer. So we’re doing a lot of that we’d like to do more of that we’ve had some really interesting corporate interest, which is humbling and you feel like Lucky that they’re inviting us into our space. So that’s ongoing, what we’re developing is this idea of pure workforce.

Illinois now reimburses peer support work, which means somebody who identifies as having lived experience, experience goes through training, etc, and becomes that peer that therapeutic support, whether it’s mentorship or case management, or hospital advocacy, they’re so good at this job. But basically, that’s the route we’re exploiting them and their experience to help somebody else. And so there has to be a really strong caretaking strategy and management strategy. And we all like advocacy around like, professionalizing there’s old school people in this space who do not believe that the patient should be the staff. Right?

Alexa

So anyway, so we want to kind of create like, what does that onboarding look like? How can we become a center of excellence? How can we become a place for people to go through this training and go out in the world? We you know, you talked earlier about siloing even thinking about folks who go into PA. With health policy, they and do lead mental policy and yay, Amen.

Like for them, they don’t understand a lot of the clinical like mechanisms. So how do we create a space where people can cross train and train together and become colleagues as opposed to I’m going to sit my own discipline. So that’s something we would really like to fund and engage in and partner with. And then I would say one of the other things kind of coming from a similar perspective is there’s not an accreditation agency that is peer led, there is the ways in which hospitals and healthcare systems become accredited. Are your notes in line? Are you submitting the right paperwork? And are your facilities safe and not a suicide risk? As opposed to which all which is important, right? And we also need to, I think, engage in the peer support space to say, how are people feeling about this treatment? Is it state of the art? Is it adequate? And when we because we don’t have that I really see that as like discriminatory practice,

Nikhil

Like having a yardstick or measurement so that these facilities can be judged in a consistent way, rather than sort of haphazardly.

Alexa

Right. Or and through the lens of, is this a healing centered approach? Are people recovering? And if they’re not, it’s not necessarily a ding to you, you’re not gonna lose funding, but what do we have to then bring in, in order to facilitate that?

Shelly

Yeah, I think you know, the patient, you made a good point, also, the patient should have that voice as well. And that is really fundamentally, what’s lacking in our system, there is such a tremendous amount of hierarchy, and ability to really open up people’s eyes and ears to what is the community saying, what, what are the patients say? What are the patients thinking? What are they feeling? You know, like, as you alluded to about their feelings as well, it’s so important. You know, I mean, I even found that when I was dealing with Nikhil’s mental illness and trying to get him treatment and everything, and I had psychiatrists who wouldn’t even listen to me, as a family member telling these doctors, well my husband is suffering from XYZ symptoms, please help me. They would ignore me because I’m technically not a clinician.

Alexa

100% 100%. And it No, I’m so glad you’re bringing that up. Because don’t you also think that while HIPAA is a protected, it’s also like a significant challenge. I mean, I’m gonna get berated for saying that, but like, it’s true, that I mentioned in my keynote, the Dr. Thomas Insel, I don’t know if you guys have read his book yet. He He’s, like, in a very, I think even in the intro, I think he talks about being in Italy in a small town that we should all probably go to, that apparently has like the best mental health care in the world. And he was doing, he was riding along and doing an intervention with like, basically a Code Response Team. So clinician and nurse, maybe a police officer, I’m not quite sure there’s a young man with schizophrenia who was very active in his illness.

And they were chatting and they supported him and the woman, the Italian clinicians, etc. And so, so how, what do you guys do when this happens in America, and he’s always HIPAA, so we’re not…and she couldn’t understand how you would manage and support an individual without the support of their family. Like she couldn’t like she couldn’t comprehend it, because it doesn’t make any sense didn’t exist. Yeah.

Shelly 

You’re so right. And I hope Alexa, you’ll read my book because you’re talking about HIPAA, and my eyes are lighting up. I would love to get involved with NAMI Chicago on policy changes, because there’s a lot about HIPAA that I’ve looked into that I’ve had personal experiences with regards to his mental health that have created such devastating roadblocks, that I would love to pitch to policymakers about changes. Yeah,

Nikhil

She actually has a blog post about that – HIPAA is.

I guess the last question is, how can people get more involved with NAMI? I mean, I had mentioned the support groups. I know, I think there’s like forums on your website about how to get involved in advocacy, but maybe if you can touch a little bit more on that because I’m sure this will resonate with so many people what you’ve talked about, and I just want to make sure they have that next step. So that if they want to become more involved with the NAMI cause.

Alexa

Thanks. Yeah, so we are here for you to support you. If consuming information on our website feels good, we have some really good stuff there. Our helpline is available and free and confidential. So even if you’re like, I don’t even know like, should I talk to a therapist? How do I support my teenage daughter? Like we can negotiate it no questions, a silly question, and we love to support you. And also can help you navigate the system.

You can sign up for our policy and legislative alerts, where we’re doing like bigger stuff in that space. It’s really interesting, like there’s some pushes that we really need to support with. And even though we’re a blue state, and there’s a tremendous amount of, of on both sides of the aisle support for mental health, it’s always about appropriations, right? It’s always about are we getting funded.

Our NAMI walk is in September. So it’s free to register, create a team. It’s so fun and joyful and hopeful. And it’s usually a beautiful day. And so join that. Because the truth is like we are several million dollars away from stabilizing in terms of what we can do to support community. So we really need a tremendous amount of support. And let’s have a conversation. Like let’s keep having these open dialogue. So you know, invite us into your spaces, people who are watching. We really want to hear from you and see how we can be better partners.

Nikhil

Excellent, excellent. Anything else you want to say in conclusion to wrap up or just elaborate on anything you might have talked about? We talked about a lot of stuff, but

Alexa

I just think you guys are amazing. And I read your book, and thanks for I always find it really beautiful. When I have the opportunity to spend time with somebody who loves somebody so much with a mental illness, somebody who’s been in the trenches, somebody who’s living with, and the humility that you offer me as somebody who’s more abstract, when you really are the experts is just lovely. And it was really a pleasure spending time with you today.

Shelly Sood

Thank you so much. Thanks so much. This was a great conversation and it was so wonderful to meet you and what you’re doing at NAMI. Chicago is absolutely incredible. So thank you for everything you contribute to mental health.

Alexa

Yeah, thank you.